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Shameless self-publicity

A few weeks (months?) ago, I got a call from Cosmopolitan to ask if I’d talk about home-testing kits for genetics – stuff like what 23andMe offers. We talked, and I like to think that I said something useful… and promptly forgot all about it, until just now, when the University of Manchester press office sent me a link to this: a story about HIV self-testing kits in the UK.

It’s a piece that quotes me. It quotes me from that interview I did about genetic – genetic! – tests:

Iain Brassington, Healthcare Ethics professor at the University of Manchester told Cosmo Body:

“People invest a lot in genetic information and it could have a serious psychological impact. Someone could feel anxious, distraught, even suicidal if they find out they are carrying a gene associated with particular diseases.”

Can you see the problem here?

Apart from the fact that I’m not, and am unlikely soon to be, a Professor, I mean?

OK: for clarity’s sake (and just in case there are any Cosmo readers who’ve drifted here): genetic tests and HIV tests are VERY DIFFERENT THINGS, and raise CORRESPONDINGLY DIFFERENT PROBLEMS. I don’t think that HIV is a genetic condition. Only idiots think that. Some of the problems with one might well be problems with the other. But we can’t leap between the two so easily. I don’t know what I think about home HIV tests; I’ve not thought about them much, and noone’s asked me to have an opionion on them yet. THIS QUOTATION MAKES ME LOOK LIKE AN IDIOT.

Also, they put words in my mouth. I can’t remember what I said, but I doubt it’d’ve been anything as fatuous as “Someone could feel anxious, distraught, even suicidal if they find out they are carrying a gene associated with particular diseases.” That’s simply not the kind of thing I say.

Yes, I’m posting here shamelessly, because I don’t want that particular piece to appear if people Google me without some kind of balancing act. And I’m posting a screengrab just below the fold for posterity’s sake, just in case Cosmo deletes the page.

For those not familiar with it, 23andMe allows individuals to swab themselves and have their genome analysed, at a cost of £125. The company is offering to generate a report covering about a hundred traits, giving information on a range of potentially important to fun things: the list includes tests for the presence or absence of inherited conditions such as Tay-Sachs and Beta Thalassemia; risk factors relating to things like Alzheimer’s; how much DNA you have in common with Neanderthals; and earwax type.

To be honest, I’d’ve thought that by the time you’ve got £125 to spend on a test like this, you’d probably know all you’d ever want to know about your earwax, but… well, apparently there’s more. Joy.

Anyway: BBC Breakfast invited me to witter on about it the other day. I only got a couple of minutes, and so didn’t get to say much; shamelessly, I’m going to think aloud a little bit here. My basic starting point is that it’s hard to see why the test per se is too big a problem: all else being equal, who would begrudge a person information about himself? All the same, I think that there are questions that are probably worth asking. (NB: in what follows, whenever I mention 23andMe, the point should be taken to cover any company offering a similar service.) So, in no particular order… more…

It turns out that the version of the Medical Innovation Bill about which I wrote this morning isn’t the most recent: the most recent version is available here. Naïvely, I’d assumed that the government would make sure the latest version was the easiest to find. Silly me.

Here’s the updated version of §1(3): it says that the process of deciding whether to use an unorthodox treatment

(c) consideration of any opinions or requests expressed by or on behalf of the patient;

(d) obtaining any consents required by law; and

(e) consideration of all matters that appear to the doctor to be reasonably necessary to be considered in order to reach a clinical judgment, including assessment and comparison of the actual or probable risks and consequences of different treatments.

So it is a bit better – it seems to take out the explicit “ask your mates” line.

However, it still doesn’t say how medics ought to weigh these criteria, or what counts as an appropriately qualified colleague. So, on the face of it, our homeopath-oncologist could go to a “qualified” homeopath. Or he could go to an oncologist, get told he’s a nutter, make a mental note of that, and decide that that’s quite enough consultation and that he’s still happy to try homeopathy anyway.

So it’s still a crappy piece of legislation. And it still enjoys government support. Which does, I suppose, give me an excuse to post this:

One of the things I’ve been doing since I last posted here has involved me looking at the Medical Innovation Bill – the so-called “Saatchi Bill”, after its titular sponsor. Partly, I got interested out of necessity – Radio 4 invited me to go on to the Sunday programme to talk about it, and so I had to do some reading up pretty quickly. (It wasn’t a classic performance, I admit; I wasn’t on top form, and it was live. Noone swore, and noone died, but that’s about the best that can be said.)

It’s easy to see the appeal of the Bill: drugs can take ages to come to market, and off-label use can take a hell of a long time to get approval, and all the rest of it – and all the while, people are suffering and/ or dying. It’s reasonable enough to want to do something to ameliorate the situation; and if there’s anecdotal evidence that something might work, or if a medic has a brainwave suggesting that drug D might prove useful for condition C – well, given all that, it’s perfectly understandable why we might want the law to provide some protection to said medic. The sum of human knowledge will grow, people will get better, and it’s raindrops on roses and whiskers on kittens all the way; the Government seems satisfied that all’s well. Accordingly, the Bill sets out to “encourage responsible innovation in medical treatment (and accordingly to deter innovation which is not responsible)” – that’s from §1(1) – and it’s main point is, according to §1(2), to ensure that

It is not negligent for a doctor to depart from the existing range of accepted medical treatments for a condition, in the circumstances set out in subsection (3), if the decision to do so is taken responsibly.

Accordingly, §1(3) outlines that

[t]hose circumstances are where, in the doctor’s opinion—

(a) it is unclear whether the medical treatment that the doctor proposes to carry out has or would have the support of a responsible body of medical opinion, or

(b) the proposed treatment does not or would not have such support.

So far so good. Time to break out the bright copper kettles and warm woollen mittens*, then? Not so fast. more…

With any luck, the nuts real-world work schedule of the past few months* will begin to ease in a few days, so I should be able to start blogging more frequently soon; but I thought I’d take a moment out from writing jurisprudence lectures to do some thinking out loud about Belgium’s recent change to its euthanasia law, which legalises it for children. This is partly because it’s interesting in its own right, and partly because I’m debating it on Radio 4’s Sunday programme this week. I’ve drafted this post before the interview’s recorded, but I’m not publishing it until after (though before the broadcast); let’s see how my thoughts here pan out on air…**

For reference, the text of the law is available here in French, and here in Dutch – thank goodness for A/S levels. A decent précis provided by AP is hosted here; and Christian Munthe has an unofficial translation here.

A couple of weeks ago, the D–ly M–l** asked me to comment on the Personal Genome Project‘s call for 100 000 volunteers who’d be willing to have their DNA sequenced so that it could be correlated with their health records and used as a tool for research. As it happens, my peals of wisdom never made it into print, but here’s an expanded version of the things I said.

First up, this project is superficially similar to that undertaken by the UK Biobank. The idea behind both is that, since many illnesses have a genetic component to them, understanding those illnesses fully will require doing genetic research. Sometimes that will be on cells in a lab; sometimes it’ll be population surveys. Often, the idea will be to learn as much as we can about individuals’ genomes, and then to keep track of their health over a prolonged period. If, across the population, we notice a correlation between a given gene and a given illness, the hope would be that we could work out more effective treatments. Insofar as participating in this project might help with research into things like cancer, it’s tempting to think that it’s admirable – some even argue that participation in medical research is a moral duty (though others disagree: to and fro and to and fro***; cf this and this and this).

Having asked out loud whether anyone could explain a couple of odd FtP decisions, I got this from Nathan Emmerich, offering sociological pop at an answer…

Iain wondered if anyone could explain the morality that underlies a couple of recent Fitness to Practise decisions made by the GMC. Well, more accurately he wondered if anyone could explain the “public perception” or “public confidence” aspect of the GMC’s Fitness to Practice guidelines. Never one to shirk a challenge, I thought I would give it a go…

The first thing to note is that one has to change, or perhaps expand, the terms of the debate. As a discipline applied philosophical bioethics tends to focus on “ethics”, “ethical reasoning” and codified rules over what I (and some others) would call “morality”. For our present purposes the starkest way to express the idea is by appeal to the historical morality of the UK medical profession, which used to be based on the idea of the British gentleman of a certain class and standing (and, obviously, race and gender).

This morality was uncodified – it had no explicit ethics. Indeed, more than this, it was held to be uncodifiable both in principle and as a matter of morality. It was thought it would be wrong to codify gentlemanly (medical) morality as to do so would open the way to, first, individuals who merely followed rules rather than being the correct sort of persons or having the right character. Second, it would lead to people who did not have the right character or standing attempting to second-guess the decisions of medical professionals or gentlemen. Such a thing was, of course, intolerable.

There is no denying that there was a lot wrong with this ‘moral culture’, and a range of factors has been influential in the modification of medical morality from this historical position to the one we have today. However, “medical morality” has vanished completely, indeed, it is impossible for it to do so: the medical profession (indeed any profession or cultural group) has some underlying moral ethos. Some cultures, like modern medicine, may also have explicitly stated ethical codes and guidelines that may be more or less in line with the underlying moral culture. Nevertheless the moral culture itself is not obviated by these codes. Indeed it underpins the existence and application of any such formally stated ethics.

The problem here is that no rule contains the principles of for its own application. more…

Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice.

– and item 15 –

Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

The full ruling is available here (H/T to Ophelia Benson for the link): it’s long, and I’ve not had a chance to read it, so contributions in the comments below this post would be welcome. From what I can tell, the decision is still liable to go to appeal, so it might yet turn out to be a false start; but it’s highly notable nonetheless.

Though I’ve made no bones here about my broad support for the legalisation of assisted dying, both as assisted suicide and euthanasia, I do wonder if in this case some of the judge’s reasoning may be a bit iffy. more…

BioNews asked me to write something about Matthew Liao, Anders Sandberg and Rebacca Roache’s paper on engineering humanity to minimise global warming. I’d been meaning to for a while, so this was the prod I needed. Anyway: my take on their paper is here; but I thought I’d also reproduce it on this blog. What follows is the version I submitted; it’s substantially the same, save for a few tweaks that BioNews made to conform with their house style. (They didn’t like the Latin…) I am massively grateful to the student who made the point about small people taking more steps to get anywhere. I’d also like to think that the idea of making people smaller led me to Lilliput, thence to Gulliver, thence to the voyage to Laputa. It didn’t. I’m not that clever. Laputa made its appearance quite unbidden. But – hey, it works.

* * * * *

There’s a part of Gulliver’s Travels where Gulliver visits the grand Academy at Lagado, wherein one of the academicians is trying to derive sunbeams from cucumbers. It’s tempting to wonder at first glance whether there’s something of the Academy to Liao, Sandberg and Roache’s proposed strategy for combating climate change: that we could engineer humanity to be less of a drain on the environment. Their paper, “Human Engineering and Climate Change” (forthcoming in Ethics, Policy and the Environment, with a pre-publication version here), has already attracted a reasonable amount of media interest, and it’s not hard to see why. The headline proposal is that we could engineer people to be smaller, on the grounds that smaller people require less food and fuel: a population that is smaller on the whole would have less environmental impact. (A small part of this – and I’m genuinely fond of this idea – is that heavier people wear out shoes and carpets more quickly, so are more resource-hungry. On the other hand, as one of my students has pointed out, short people take more steps to get across the room; the carpet might actually suffer more. Moreover, a small person has a greater surface-to-volume ratio, and so would lose heat more quickly, possibly requiring more central heating and more food.) more…

A story that has had a little airtime on the news over the last 24 hours or so concerns requests by US officials that details of research into a bird flu variant be held back from publication on the grounds that it might be of use to terrorists:

The National Science Advisory Board for Biosecurity recommended that the “general conclusions” be published but that final manuscripts not include details that “could enable replication of the experiments by those who would seek to do harm”.

Professor John Oxford from Barts and the London School of Medicine [says], “They should definitely publish. The biggest risk with bird flu is from the virus itself. We should forget about bio terrorism and concentrate on Mother Nature.” [He and Prof Wendy Barclay from Imperial College London] agree that the influenza virus would make a pretty poor bioterrorist weapon, unless your aim was to spread the infection across the world. Influenza has no respect for borders, so introducing a virus in one country would inevitably spread it globally.

But Michael Parker, Professor of Bioethics and Director of the Ethox Centre at the University of Oxford, disagrees. “The position that everything should be published is not tenable. There must be some scientific information which contains an immediate threat to public safety if it fell into the wrong hands.”

Parker’s worries reflect those articulated by Tom Douglas and Julian Savulescu in the JME a little while ago; they argued that synthetic biology raises significant new ethical problems, not least because of the potential for “dual use”.

I have to admit that I have yet to be convinced by the biosecurity worries. more…